Sunday, December 28, 2014

First Diaversary

I don't know whether to dance and sing and scream for joy or bury my head in my blankets and bawl uncontrollably.  It's been a year today.  This evening marks the day I heard the words "Your son has Type 1 diabetes and is in severe DKA and we need to move him to the PICU."   His breathing was so fast, like he'd been running a marathon and just finished.  His face was ashen and his lips had a blue tint to them.  He had dark circles under his eyes.  And his hands and feet were the coldest things I'd ever held.  He was lifeless.  I was so scared.  Today he is alive.  A year later and he survived.  In another country or 50 years ago or had I not taken him in when I did there would have been no hope.  I hold onto that hope with two hands and a whiteknuckled grip.  I don't want to think of what could have, what might have happened.  He's here.  I'm grateful.  I'm grateful for that ER doctor.  She was an angel.  It was our second trip to the ER.  My Mommy instincts were screaming at me that something wasn't right with the stomach bug diagnosis we had in the morning, in the first trip to the ER.  They missed it.  They misdiagnosed him and we almost lost him. 
First trip to the ER.  Stomach bug diagnosis.

This time of year has always been a time to reflect, to look back.  It's so difficult to do that today.  We've changed so much this year.  Now there is so much planning for meals and outings and just life in general.  It was so overwhelming at first. It's still overwhelming. It's like always having a newborn. The disease hasn't changed.  We have.   Type 1 is the only disease I can think of where you are given the basics and sent home to care for it essentially on your own.  Insulin can be a deadly weapon.  It can give life but it can kill too. But the other option is not even on the radar.  There is no other treatment.  No amount of diet change, exercise, or any other "cure" bandied about will change a diagnosis of Type 1, he'll always need a source of insulin since his body doesn't have it anymore.  Type 1 is autoimmune.  It is a disease where his own body attacks the cells in the pancreas that make insulin and kill them off.  It sucks, but with artificial insulin injected into his body 4 or more times a day he gets to live.  I'll take that.

We've made misstakes.  We've given too much insulin where he then needed to eat more carbs.  We've not given enough insulin and then had to correct highs later.  We've forgotten to take the kit in the car with us.  We've forgotten to pick up more insulin at the pharmacy in time for breakfast.  He has snuck treats without telling us or us noticing until he was having highs all day.  Misstakes happen.  Luckily these misstakes were caught and there weren't any immediately noticeable issues.  But with every high I worry about longterm effects to his body.  We try and avoid misstakes, but we are human. 

 Christmas was wonderful this year.  Quiet, uneventful. Sugar Bear's diagnosis and stay in the hospital colored last Christmas with a broad stroke.  It made it the last "normal" holiday.  I remember the boys eating their candy from their stockings before breakfast.  I remember the laughter and happiness.  I remember the ease.  I remember the normalcy.  I remember the freedom.


What a difference a year makes.


So I'll spend my day in reflection and gratitude.    We are stronger because of our year.  We are more prepared.  We are healthier.  We are more aware.  We might not have the same ease or freedom and there is pain involved, but we got the best gift in 2013 when we got to keep him. I'll take that.  I have my baby. 

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